Health equity and wellbeing among older people’s caregivers in New Zealand during COVID-19: Protocol for a qualitative study

Background Knowledge of the challenges unpaid caregivers faced providing care to older people during the COVID-19 pandemic is limited. Challenges may be especially pronounced for those experiencing inequitable access to health and social care. This participatory action research study, located in New Zealand, has four main objectives, (i) to understand the challenges and rewards associated with caregiving to older care recipients during the COVID-19 pandemic restrictions; (ii) to map and collate resources developed (or mobilised) by organisations during the pandemic; (iii) to co-produce policy recommendations, identify useful caregiver resources and practices, prioritise unmet needs (challenges); and, (iv) to use project results in knowledge translation, in order to improve caregivers access to resources, and raise the profile and recognition of caregivers contribution to society. Methods and analysis Māori, Pacific and rural-dwelling caregivers to 30 older care-recipients, and 30 representatives from organisations supporting caregivers in New Zealand will be interviewed. Combining data from the interviews and caregivers letters (from an archive of older people’s pandemic experiences), framework analysis will be used to examine the interrelated systems of the human ecological model and the impact on caregiving experiences during the pandemic. Resources that service providers had created or used for caregivers and older people will be collated and categorised. Through co-production with caregivers and community partners we will produce three short films describing caregivers’ pandemic experiences; identify a suite of resources for caregivers to use in future events requiring self-isolation, and in everyday life; and generate ideas to address unresolved issues.

V1.1 24/05/2021 PURPOSE: The individual area of enquiry is structured to establish changes in caregiving during COVID-19 restrictions and positive and negative outcomes on personal resources/wellbeing. In addition to balancing work and providing care, caregivers may have faced additional child-care pressures exacerbated by school and nursery closures. Employers or business owners may have encountered additional stress associated with economic uncertainty.

Question
Prompts Please tell me about the person or people that you provided care to during COVID19 restrictions? If caring for more than one person please ask participants to select/focus on one (or one group e.g., if it's two parents in a household) for remainder of questions.
Age, relationship, and why they needed care/support, as care needed because the person had COVID19 (and if so was the caregiver tested).
Please tell me whether each of you provided support/care before COVID and whether it changed during COVID19 restrictions; or whether you started providing support/care during this period?
Changes in amount (hours per week or day) OR types of emotional/functional support changed OR living arrangements changed and why.
SHOW BUBBLE PICTURE CARDS: Please describe who was in [the care recipient's] bubble at Level 4 and at Level 3?
Age and relationship of people in bubble at each level, number of households, proximity of other households.
Please describe how the decisions about "who is in our bubble?" were made?
Were decisions easy to make, or tricky.
Please describe a typical day as a caregiver during COVID19 restrictions? Routines, self-care, exercise, leisure, cooking, sleep.
How did each of you feel about caregiving during COVID19 restrictions? Positive and negative aspects, health, emotional wellbeing . Changes or disruptions in relationships between caregivers. Did caregiving during COVID19 restrictions result in any additional out-of-pocket expenditure (compared to before this period), and if so, could you tell me what this was for? NB we are not asking about $ amount Services, goods (e.g. bedding, mobility aids and incontinence products), home adaptations to improve accessibility, increased heating, laundry, transportation.

ASK GROUPS/PARTICIPANTS WHO EXPERIENCED ADDITIONAL EXPENDITURE ONLY:
How , if at all, did this increased out-of-pocket expenditure impact on you?
Financially, mental health ASK ALL: Please describe any other roles and responsibilities that you had during lockdown, and how you managed these in relation to caregiving.
Relationships roles (e.g. spouse, mother, grandmother); employment; community or voluntary roles. ASK PARTICIPANTS THAT WERE IN PAID EMPLOYMENT ONLY. SHOW ESSENTIAL WORKER PICTURE CARD: Please tell me more about your experience as an employee and caregiver, and whether this changed during COVID19 restrictions?
Type of work and hours worked; essential worker strategies for protecting the care-recipient from COVID19; flexible working at home; loss of job or primary source of income and any additional challenges this created.

V1.1 24/05/2021
PREAMBLE: Now I'd like to talk about your relationships with whānau, family, friends and neighbours (not paid/formal carers) and whether COVID19 restrictions impacted on your relationships, and influenced caregiving in any way.
PURPOSE: This section will explore family, social networks, interpersonal relationship in relation to caregiving. Whereas large, integrated networks are more easily "activated" to protect individuals in the face of crisis, disjointed or attenuated networks may not have been so responsive. Family and caregiving networks may have been hampered by social distancing. The caregiver-care recipient relationship may have been strained due to increases in caregiving tasks, hyper-vigilance, and less respite.

Question Prompts
Please could each of you tell me about your personal relationship with [care recipient] during COVID19 restrictions, for example, was it the same as before restrictions or did it change?
Changes across alert levels, the quality of relationship Describe the relationships between each you as a group/whanau/family of caregivers during COVID19 restrictions, for example, were your relationships the same as before restrictions or did they change?
Changes across alert levels, conflicts, the quality of relationships Please tell me a little bit more about whether [each person] provided support/care before COVID19 restrictions and whether it changed during restrictions; or whether they started providing support/care during this period Changes in amount (hours per week or day) OR types of emotional/functional support changed OR living arrangements changed and why. AND challenges/barriers to coordinating caregiving activities. How did you co-ordinate activities between you?
Please tell me whether any whānau, family, friends and neighbours not present in this interview, helped you to provide support/care during the COVID19 restrictions? Feeling more or less connected / supported. Please tell me whether any whānau, family, friends and neighbours supported each of you (rather than the care recipient) during COVID19 restrictions?
For each: who (relationship to caregiver), care/support provided Please could each of you tell me about other personal relationships during COVID19 restrictions, for example, were they the same as before lockdown or did they change?
The quality, why they changed, how did it make the participant feel? PREAMBLE: Next, I would like to discuss any contact that you had with organisations that provided you (or the care recipient) with care or support during COVID19 restrictions, for example, GP, district nurses, local health or social care providers, iwi, charitable or faith-based organisations PURPOSE: The organisational area of enquiry will establish whether clinical home care service guidelines need updating in light of experiences during the pandemic. For example, how did strategies developed for formal home care providers during COVID-19 to protect staff and organisational integrity, alongside issues concerning the availability of resources (e.g. PPE, respite, day care), impact on caregivers? Did the application of DHB's telemedicine and telehealth support or hinder caregivers? Question Prompts Please tell me which, if any, formal service providers, organisations, groups, marae, churches or schools supported you or provided care to [care recipient(s)] during the COVID19 restrictions? Who were they and how did they help?
Identify each provider (and type of organisation) and the care/support provided, material resources (e.g., food, supplies), COVID19 testing, cleaning, home modification, equipment installation. In-person visits, digital connection (e.g. telemedicine, telehealth) or telephone. ASK IF FORMAL SERVICES USED, FOR EACH ORGANISATION: Please tell me a little bit more about whether [each organisation] provided support/care before COVID19 restrictions and whether it changed during restrictions; or whether they started providing support during this period?
Changes in amount (hours per week or day) OR types of care support changed and why. Feeling more or less connected / supported.

ASK IF FORMAL SERVICES USED, FOR EACH ORGANISATION:
Please tell me about your experiences of the support or services that you received and the relationships you had with the staff or people providing help.
Changes in relationships e.g. managing PPE issues while protecting care-recipient from COVID19 with a trusted/longterm home care worker, issues for ongoing relationships. Turnover of staff, negotiating new relationships with new workers. Satisfaction with telehealth/telemedicine. ASK IF FORMAL SERVICES USED: How were these services coordinated?
Key worker, caregiver, health navigator, easy/difficult Did you have to solve any problems associated with managing health, care or other practical things associated with caregiving (such as shopping) during COVDI19 restrictions? If so, please describe in as much detail as possible, how you found the information you needed.
What did they do/who did they ask, online/telephone/in person. Culturally or linguistically safe, appropriate and accessible. Generic resources suitable for people living with dementia. Level of confidence in the information provided.
Please describe any challenges associated with getting or receiving help from organisations during the COVID19 restrictions?
Difficulties with navigating health and social care systems, communication, co-ordination or delivery (e.g. no PPE), concerns about letting care workers into home including increased stress, digital access, appointments with GPs and specialists, flexibility , additional roles taking up slack where there were gaps in support / services. Please describe anything you think should have been provided during COVID19 restrictions, that wasn't? GP practice, pharmacy, normally scheduled services, respite, relevance or services, socially, culturally or linguistically appropriate and accessible Please describe any new ways in which organisations provided information or support that worked really well for you?
Innovations for routine use beyond restrictions PREAMBLE : Now I want to ask you about the community and neighbourhood you lived in during COVID19 restrictions -the local amenities that were available to you, what sort of vibe it had and the interactions you had within it.

PURPOSE:
The community/ neighbourhood area of enquiry will identify inequities in access to services for caregivers in disadvantaged communities and for those living at a distance from 'resource centres'. We also need to know more about exclusion from access to information due to a digital divide in access to broadband internet services.

Question Prompts
Please describe the neighbourhood you lived in during COVID19 restrictions. Facilities, amenities (e.g. access to supermarket/groceries, takeaways, food delivery services, local medical services) transport links, sense of community social cohesion (e.g. Teddy Bears in windows) How did you contact local facilities and amenities, or stay in touch with people in your neighbourhood during COVID19 restrictions?
Landline, mobile phone, laptop/PC, email, video-call. Digital exclusion, mobile coverage, costs, satellite or fibre wifi, quality of connection. FaceBook community groups, telephone round robin. Over the fence. Were any of you involved in any volunteering activities before COVID restrictions or were you receiving any help from volunteers or voluntary groups? If so, please tell me about these, and what happened once COVID restrictions started?
Local organisation, iwi, hapū, cultural group or church/faith-based organisation